How Rare is Finding a Romantic Relationship for Rare Patients?

Original Article on Rare Daily by Global Genes
https://globalgenes.org/raredaily/how-rare-is-finding-a-romantic-relationship-for-rare-patients/

Name: Christian Jacobs

Relationship status: Single

Gender: Male

Age: 25

About me: I have a rare disease called Homozygous Familial Hypercholesterolemia. My liver is incapable of filtering out my bad cholesterol properly, and as a result, I have severe heart disease and plaque buildup in my arteries. During my free time from nursing school, you can usually find me getting my blood filtered through a dialysis machine, sitting in a doctor’s office waiting room, or standing in line at the pharmacy waiting for my prescription to be filled “shortly.”’

How would you describe the perfect date? That’s a tough one. I’d have to say April 25 because it’s not too hot and it’s not too cold.

What do you do for fun? I like to take long walks down the hospital hallways trying to locate the correct place I’m supposed to be. I also enjoy spending hours on the phone with insurance companies trying to convince them to continue covering me. I occasionally take handfuls of pills and take bets on which side effect will kick in first. When I really want to take a walk on the wild side, I time how long it takes for my body to become dehydrated. (Hint: not long.)

How do you spend a typical evening? You know, all normal things most 25-year olds spend their evenings doing. I crawl into bed, stare at the ceiling and wonder if I’ll wake up the next morning. Oh, yes, and then I may or may not cry myself to sleep worrying about all my medical issues and all the stress I put all my family through because of my condition.

What do you look for in a significant other? Someone who has normal cholesterol levels.

Any words of advice on dating you? Honestly, swipe left and save your time.

You will most likely rarely come across a dating profile as unique as mine. Most 25-year olds fill their pages with reflections of “normal” life, whatever normal might mean to them. For me on the other hand, I am more preoccupied with my doctors’ appointments, treatments and anything related to keeping my health from coming off the rails. In other words, I’m trying not to die. Dating has always been a rather intimidating and stressful topic for me mainly because of my rare disease, explaining why I have done a great job of avoiding the subject all together. It’s easier that way. I was diagnosed with Homozygous Familial Hypercholesterolemia 23 years ago and it has dictated nearly every day of those 23 years, including dating and relationships.

As we come into another holiday season, it’s not hard to get lost in the hustle and bustle of life, and to let questions from family members take a toll on the heart and mind. Family get-togethers, parties and holiday movies – they are what I enjoy the most, but it’s also when I become very aware of one thing: I’m going stag this year and ridin’ solo. This is not always by choice. Don’t get me wrong, it’s not because there isn’t a girl out there who I’m interested in. Instead, it’s easier for me to close myself off rather than put myself out there and face the possibility of being rejected. If you are living with a rare disease you know what I’m talking about – those feelings of being left out, rejected and ostracized, the one standing on the fringes of the party.

It also doesn’t help the situation when every time I get together with family, especially during the holidays, the dreaded questions always are asked: “Are you seeing anyone?“, “What about that one girl?“, or my favorite, “So and so’s daughter is single, want me to hook you up?” Usually I answer with a quick “meh”, but in my mind I’m secretly asking one of three questions: 1) Is she desperate? 2) Am I desperate? 3) Is her family desperate?

This crazy rare disease and those awkward moments spent dodging the infamous dating questions will never go away. Feeling different and alone are not going away from me either. It’s one of the many reasons why I love the musical Wicked. When I see Elphaba, I see me. There is a line she says that I feel summed up much of my childhood: “What?! What are you looking at? Oh, do I have something in my teeth? Okay, let’s get this over with. No, I’m not seasick, yes, I’ve always been green, no, I didn’t chew grass as a child!” The only difference is I would have said, “No, I’m not sunburnt, yes, I’ve always been orange, no, I didn’t rub oranges on me as a child!”

Just like with Elphaba and many with a rare disease, I have been through a lot. After years and years of practice, I have perfected the “everything’s alright”’ face I like to wear on a regular basis. Truthfully, though, it’s hard going through major surgeries, treatments, and making life-changing decisions all the time and keeping up the “everything’s alright” attitude. Yes, I can keep my cool on the outside, but on the inside I’m scared, frustrated and want to cry. Let’s be honest, if I was a magazine subscription, I’d have a lot of issues!

When it comes to dating, however, I have always felt that it’s easier to not date because a) I don’t want them to be in pain if something happens to me, b) being rejected your whole life sucks, so I’m just better off avoiding, and c) I’ve never dated before.

Yes, you heard it correctly, I’ve never dated before. When I’m committed to something I am fully committed and I made the decision back in fifth grade that I wasn’t going to date anyone. I must say I have done a fine job at keeping my commitment! Though my commitment to myself 13 years ago is still holding strong, I’m no longer in fifth grade and this is not how I feel anymore. I know I need to make the effort to put myself out there, be vulnerable, and face rejection because if not, I will be wondering why next holiday season I am still in this same boat.

But what does that person look like? Well I have no clue! I haven’t given myself much time to really even think about the subject. Don’t get me wrong, overtime I have gathered bits and pieces of what I look for in a partner, but the problem is that person for me has never existed, because I’ve never allowed them to exist in my life. I put up that wall many years ago and have kept it up for safekeeping ever since. In all honesty though, the only thing holding me back at this point is myself. I’ve been using my disease as a scapegoat to avoid the subject all together.

As we head into this next holiday season, a season full of personal reflection and family awkwardness, maybe it’s time for me to reflect on a few changes to make in my own personal life. So, if you’ve a daughter or a niece or a neighbor or your husband’s niece’s stepsister twice removed who is single and looking, feel free to share my profile, but be sure to include this warning: if you pass out at the sight of blood or generally can’t stand the smell of hospitals, you probably should just keep looking. But, if you don’t mind long hours spent in the hospital and are willing to go on a journey with a lot of ups and downs, consider swiping right. And maybe, just maybe we’ll be a match!